My Journey with a Mitochondrial Disease - "But they that wait upon the LORD shall renew their strength; they shall mount up with wings as eagles; they shall run, and not be weary; and they shall walk, and not faint." Isaiah 40:31 KJV

Diagnosis in 2006 - Parkinson's Disease and Peripheral Neuropathy, then in 2007 - Essential Myoclonus. Finally in 2011, after a muscle biopsy, I was diagnosed with Mitochondrial Myopathy as well as Peripheral Neuropathy.

Share my journey - coping with the testing, the medicines, nutrition, digestion problems, exercise, the emotions, uncertain diagnoses and no telling what else!

Tag Archives: difficulty walking

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It was all I could do to walk this morning, so for the first time ever, I used the cane when I went to fix breakfast for Daddy. Before I was on the medicine, I was able to hold onto furniture and walk enough, so I could hide how bad off I was from Daddy, since his vision is so bad. But I didn’t have a choice this morning. He was upset, but I couldn’t help it. I’ve been gradually telling him what’s going on, so I could keep it from being such a shock, anyway.

Our pharmacy does have voice mail on when they’re not open, so the doctor’s call went through yesterday evening. Trouble is, our pharmacist doesn’t have the medicine and can’t get it until tomorrow. So we checked with a nearby town’s CVS, but they didn’t have a full amount of the prescription. My DH got the prescription, but it took several hours for it to be ready.

We finally got the medicine about 1:00PM, so I took the Sinemet and the Lodosyn together, and I had a baked potato for lunch at 1:30. I dozed a bit, but so far the legs are still very wobbly.

Lodosyn is an additional dose of Carbidopa, added to the Carbidopa that is already in the Sinemet. It does not help with the Parkinson’s symptoms, but it helps control the bad side effects of the Lodopa in the Sinemet, which is what changes into Dopamine in the brain. That helps to replace what the brain is no longer producing.

I decided, after wearing myself slap out using the walker the last few weeks, that I needed to try something a little different. So we’ve been looking for another walker at the thrift stores, thinking I might try putting wheels on all four legs. We found one yesterday, and I put the wheels on this morning. I’ve only tried it in the house today, but it feels wonderful. I think a lot of the tiredness was coming from the resistance I was getting from dragging the tennis ball covered back legs across the carpet or the cement.

DH brought home a Prevention magazine from the grocery store today that has an article about a set of leg exercises in it, using one of those balancing balls. We bought one at a yard sale a few weeks ago, thinking I might be able to do some therapy with it. I’m going to ask the Neurologist Monday if I can do any of these exercises, as they look reasonable to me. I’m also planning on asking him if he can tell if this PN is permanent or temporary. I know it may be too soon for him to know, but I need to at least ask. I’ve been this way almost a year now, so I think I’ve been pretty patient.

I went to the Neurologist again yesterday, and was disappointed with the visit, to tell the truth. I know he’s a busy man, because we purposefully picked the very best Neurologist we could get. But I feel like he’s so busy that this whole process of diagnosing is dragging on interminably, because the appointments are so far apart, and so little seems to be accomplished each time I see him. It’s that last part that has me disappointed.

He wanted us to get the full study from the doctor who did the EMG, so he could read through it. If his nurse had called us prior to yesterday’s visit, we could already have gotten it, and he could have had that already done. As it is, he still doesn’t know if he will want me to undergo that test again, so I’m feeling very frustrated. We went and got the report and brought it straight back to Dr. S’s office, and I have another appointment in two weeks.

He did say, after looking at the MRI that we had taken to him of my last lumbar vertebrae series, that he now agrees with the Orthopedic doctor that my Peripheral Neuropathy was not caused by my Degenerative Disk Disease. So, it’s not my brain, and it’s not my back.

He had a lot of blood tests done, and I have to do a 24 hour urine catch on Sunday/Monday and return the jug to the lab Monday. That’s to test for heavy metals, since we do live within a quarter of a mile of an EPA toxic waste site that’s cleaned up now, but we lived here many of the years the factory was in operation.

It’s looking more and more like he thinks I have Parkinson’s, even though I’m not exhibiting a lot of the typical symptoms.

Of course, I’m still holding out that it’s just from all the stress I’ve been under and still am under. I’m writing this post from my 101 year old Daddy’s house. He usually stays by himself, and I come in to fix breakfast and supper. Meals on Wheels brings lunch. We call him during the day, and that is usually enough, but he was awfully weak this morning and hurting in his back, so I’ve stayed with him today, and I’ll spend the night here.

This whole business of every step feeling like I was dragging my feet through molasses started sometime last October, but our DD was in the hospital then, and I was staying with her, so I put off doing anything about it until March. The epidurals the Orthopedic Dr. prescribed did a great job of getting rid of the pain, but the walking did not improve. So here I am, and it’s September, almost a year later, and I’m still wading through mud with every step. Let’s just say my patience is wearing pretty thin.

My legs have been dragging all day today, and I’ve been sighing a lot. I’m just tired all over, and I’m not exactly sure why. It may be the Dyflucan tablet I took last night that’s doing it. I hope it’s something that simple. I’ve been through two bottles of Nystatin, and I still have a little thrush on the back of my tongue, and the rest of my tongue is still coated. All this as a result of the high powered antibiotics it took to knock out the colitis I had up until a few weeks ago.

I had planned on going to church tonight, but it started raining a little before it was time to go, and DH was reluctant for me to get out, after being so tired all day. Oh well, I’ll try again next Wednesday.

I had my first dream last night in which I was walking the way I’m walking now. The “me” in the dream was very old, but it was definitely me, and the walk was definitely my walk. I would have thought my dreams would have continued to be of my normal walk. I’ve wondered before if quadraplegics’ dreams had them walking or not. Now I guess I know the answer to that one.

I woke up super early this morning. I’m hoping I can blog for a little while and then go back to sleep, but that remains to be seen. Right now, I’m not even yawning.

I swallowed my silly pride and used the walker at church this morning. After the first few people stopped me to ask if I was worse, and I assured them I wasn’t, I got used to it, and it wasn’t so bad after all. It really did make the long walk from the car to our Sunday School room soooo much easier. I can walk more naturally with it, too, which should help my muscles get back to a normal gait, I hope.

I realize now that I should have been using a walker for the last few months, but Dr. B is the only medical person who has told me I should have one, so I figured I wasn’t bad off enough to need it. And he didn’t just tell me, he fussed at me big time. Now I’m glad he did!!

Another reason I’m afraid of using a walker in public is that I’ll be setting myself up for future embarrassment. I’ll have to explain that one.

My original back flare up, that precipitated this difficulty walking, was caused by spending the better part of this last year taking care of our older daughter, as she was in and out of the hospital something like ten times for about 60 days total. I stayed with her constantly with each hospital trip, “sleeping” in a recliner, and my back paid for it.

I took care of her at home in between hospital visits, too, often getting up in the middle of the night for hours dealing with her needs. I all but single handedly packed and unpacked their things, as the apartment our SIL and she were in was not handicap accessible. The apartment people moved them from one apartment to a better one that she could get in and out of easily, and it had an extra bathroom, too, which was a big help. All that packing and unpacking took its toll on my back, too.

I survived by just about living off of Goody powders that whole year, as I kept a backache and a headache almost constantly. So why am I worried about being embarrassed??

Our daughter developed Peripheral Neuropathy as a result of nutritional deficiencies from Gastric Bypass surgery that she had had almost a year and a half before. In a matter of a couple of weeks, she went from noticing being a little clumsy to not being able to hardly stand at all!! It took them quite a while, with lots of second opinions and tons of tests to decide on a diagnosis and course of treatment, but she’s doing fine now.

What worries me is that the stress of all this may have caused me to develop a psychosomatic illness, triggered by the very real pain I was experiencing from my herniated disk. When the epidurals took care of the pain, the walking did not improve. Here I am, with Peripheral Neuropathy, after helping our DD, who has Peripheral Neuropathy?? Sounds a little fishy to me, don’t you think?? Oh, and before you jump to a wrong conclusion, dear reader, she’s adopted, so that rules out a genetic link.

Our family knows just how much stress I have been under for some time, as I have been the care giver for my mother and FIL with Alzheimer’s, my DH with cancer, and have had surgery myself, besides taking care of our DD. I’ve also been the main care giver for my Daddy, who is now 101, lives by himself, and is legally blind. Yes, he’s amazing!

My family will understand if I am suddenly “cured”, because it turned out to be all in my mind, and not a physical problem. I’m not so sure others will be so forgiving, but will think I was trying to get sympathy or something, using the walker when I didn’t “need” it.

Dr. B made me promise yesterday that I would get a walker, and I know he’s right. I’ve just been putting it off as long as I could, hoping I’d get better on my own.

Well, I haven’t, yet.

I know I’ve been silly about it, but I’ve been resistant to the idea to be seen in public, particularly at church, using a walker. It’s stupid, I know, but it’s like it’s an admission that something’s really wrong, if that makes sense.

Anyway, once I finally wrapped my head around the image of me using one, I remembered someone at church whose mother had used one before she died, and I’m borrowing that one. Somehow, borrowing one doesn’t seem quite as bad as buying one. It seems more temporary.

It’s been funny trying to learn how to use the scooters at the grocery store and at Wal-Mart. That doesn’t seem to bother me, because I get up and walk to the car. And, besides, they’re fun!! LOL

I think part of the reason I don’t want to “give in” to the walker is that people will see me differently. Before I was just walking really slow, now they will think I’m worse, when I’m really not. It makes me feel really old, too, and I don’t like that feeling, either. I may look old, but I don’t feel old inside, doggonit!!

Part of what has made diagnosing all this trouble walking so difficult, and has slowed down being able to deal with it, is that I have finally finished an almost 4 month long battle with the dreaded diarrhea. Once I was finally diagnosed with colitis and put on some very powerful medicines, I did start to improve. But by that time I had already fainted, had stitches in my head, and gotten so weak it was all I could do to walk at all.

The walking difficulties came before the colitis did, though, so the basic problem still exists. Even now that my digestive system is getting back to normal, I still can’t walk normally.

My Gastroenterologist, Dr. B, is beginning to taper me off of some of the high powered medicines he had to use to get my system under control, so that may help me walk better, too. We’ll just have to wait and see. I’m to cut one pill back for the next 7 to 10 days and let his nurse know how I’m doing. Based on what I tell her, she’ll give me instructions on what to cut back on next.

I was able to map out an Estate Sale/Yard Sale shopping tour for us today that didn’t involve a whole lot of walking, and we both had a great time. Friday has been our Date Day ever since we retired, and it sure was nice to spend most of the day normally, even if I did have a doctor’s appointment.

I was hoping we would find a walker, but we didn’t. Dr. B fussed at me for not using one, and I told him we’d been looking for one. He made me promise him that I would get one, so I guess we’re buying a walker.

I thought I’d give the new Beta Blogger a try with a new blog about my problems using my legs. You’ll see me trying different templates and doodads as I fiddle with this new system. From time to time I may do a post about what I’m trying out with the beta.

But mainly, I wanted a place to talk about the strange goings on with my walking. Just a little background material. I do have an old herniated lumbar disk that flares up and causes trouble from time to time, and I have spurs on some cervical vertebrae that also give me fits at times. I’ve had numerous epidurals over the years for both. There have been several episodes when my back was hurting, as it was this last year, when the sciatic nerve was involved, where I had trouble walking. Every other time, the walking improved and went back to normal with time when the back healed. It didn’t happen that way this time.

After the series of epidurals took care of the back pain in April, I still have not been able to take a normal step. Every step is like picking up lead weights, and it’s all I can do to move my feet. There’s no pain, but it doesn’t take much walking to exhaust me completely. So, mostly I’ve been sitting and working on the computer for the last few months, waiting for doctor’s appointments, first with the orthopedist, then with the EMG tech, and now with the best Neurologist we could find.